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On January 14th I woke up vomiting, low grade fever and the worst muscle and joint aches of my life. For the next 7 days the vomiting, fever and diarrhea subsided, however, I continued to have crazy joint and muscle aches and extreme exhaustion. I also contracted the weirdest red, web-like rash all over my body and it was very itchy. I went to the doctors and they said it was all viral and to give it some time. By day 8 I felt normal, energized and back to myself. By day 9 I started with painful joint aches in my knees and hips. By day 10 I woke up and the joint pain was also in my wrists and elbows so I took some Motrin and went to work. This was the last email I sent just seconds before my wrists and fingers gave out…

Tuesday, January 24th at 7:36 am

Hope you guys had a great weekend. Marcia, I love your facebook pictures with Mark. You guys look awesome together. How is it going with D. Is he still with you.

Sarah, how are you doing?

Sorry I have been out of the loop. This flu bug has been awful. I had it for 7 days. I only made it to work 1 day last week. I felt amazing Sunday and Monday and then yesterday at the end of the day I was doubled over in pain and had more diarrehea and nausea last night. I woke up this morning and I can barely move my two elbows, left wrist and left knee. I know I am an odd duck lol, but I am convinced that this viral thing is in my joints today. This is just too weird. I know that you had it twice Marcia. Did you have any of these symptoms.

Sarah is anything like this going on with friends of yours? Sorry I am such a struggling person lately, but when I feel better I would love to get together J

By my lunch break, my right hand was swollen, numb and tingly and I could no longer move my arm or hand. I went to the doctor during my lunch break and he said “I am not going to do blood work because your hand and arm are presenting like someone whose potassium has been wiped out by the virus and you need to eat bananas”.

Doctor’s orders the day my arm paralyzed-Jan. 2012

A few hours and 18 bananas later (lol), my left hand and arm started to do the same and my legs collapsed and I had a shooting pain in my lower back/spine. My husband brought me to the ER. By the time I got to the ER I could walk, but my legs were weakened. SNHMC med flighted me to Mass General. I spent the next 5 days having blood work, CT scans, MRI’s, EEG and EMG/nerve conduction and spinal tap, I was given the ELISA test for lyme and that was negative. One of the blood tests came back showing I had inflammation in my blood, but everything else was normal. (Ironically, my potassium level came back normal lol.) I was given neurontin for the excruciating nerve pain and two rounds of IVIG (plasma exchanges because they thought I had GBS). On day two I woke up at 4:00am and I felt “the virus” or whatever “it” was spreading and numbing and tingling my body. I was petrified; I wanted to scream and cry, but a wonderful calm came over my body instead. I took a deep breath and I prayed “Lord I can handle this as long as “it” does not go to my bowel/bladder, heart/lungs and my smile”. I closed my eyes and instantly God gave me a vision of what looked like a blueprint of my body and his hand was taking a brush and dusting (almost like dusting for fingerprints) over my bowels/bladder, heart/lungs and my mouth. I opened my eyes to find my husband searching for a text that my friend, Suzan, had sent to me. The text read Isaiah 40:31 “but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.. I smiled and knew that whatever “this” was, God had “it”, and I completely accepted “it”.

On day 3 I felt horrible. I felt like I was going to throw up and pass out. Apparently, my eyes rolled into the back of my head and every monitor attached to me was blinking and beeping because my heart rate went down to the thirties and I passed out. I was rushed out of the room for a CT scan. I do not remember this time, but my husband will never forget. He thought I was dying and he spent a good hour wondering if I had died in the CT scan. But true to God’s promise, I woke up with the worst migraine of my life and I do not remember much of the rest of the day. On day four I had more testing and by day five they stopped all medicine and said I did not have anything life threatening, and therefore I would be sent home…

I was so confused and I had so many questions. One of the neurologists decided to take the one opportunity (that my husband briefly left my side) to talk with me. She sat beside the chair I was propped up in and began to ask me questions that were totally unrelated to arm paralysis. Her questions became more and more condescending, so I continued to keep my calm and grace and answer them respectfully. She said, “Thank you for answering my questions. I feel you have post viral chronic fatigue and I need you to get a full psychiatric evaluation”…At this point my head was spinning, I was so confused. I thought, how did I think up arm paralysis in the middle of teaching circle time? How did I almost die 2 days ago and now I am going home? Even the OT was adamant that I be sent to inpatient rehab, but doctor insisted it was not worth it, because, I would be better in one week so how and why am I going home? And then this doctor did the unthinkable! She stood directly in front of my chair, completely overpowering my personal space, shoved her hand in my face and stated “I am not leaving here until you shake it”. I fell to the floor trying to shake her hand. At that moment I felt completely humiliated and traumatized and I wanted to get out of there as fast as I could. I kept my mouth shut about the incident until we were halfway home and then I burst into tears and told Josh everything that happened. HMMMMMMMMM………………………………..

Unfortunately, I now know it is almost a “rite of passage” for a person suffering with Chronic Lyme disease to be told they need a psychiatric evaluation and that they have chronic fatigue syndrome. Please pray for the day that this disease is recognized, this “psychiatric rite of passage” can end and patients can get the appropriate treatments that are needed!

Discharge papers felt like a slap in the face-Jan. 2012

Here is a website that lists symptoms of Lyme Disease and Tick Borne Infections (If only I had known!)

I have continued to highlight each symptom that coincides with Lyme disease and tick borne infections.

January 2011-I started seeing a homeopathic doctor that I loved and trusted. She started to slowly detox each organ in my body. She said it would take about one year for the detox to be complete and that I would slowly start to feel better. I did start to feel better; however there were bumps in the road along the way. (My theory is that the bumps in the road were the Lyme and co infections trying to “rear their ugly heads”.)

Eyes swelled shut 2011

February 2011- May 2011– I trained for the Tough Mudder (10-12 mile, muddy obstacle course race on Mt Snow in VT). I had not worked out in years due to illnesses, but I was excited to take on this challenge. During training my energy was better and my blood pressure did not fluctuate as low. I also gained 2 lbs. which was a miracle (I could never gain weight). The day before the Tough Mudder, I was sitting on the steps outside my eye doctor’s office waiting for the doors to open because my eyes had swelled shut and I needed eye steroids (I thought it was my extreme allergies again). The eye doctor said it was the worst swelling he had seen all season. I asked him to give me as much medicine as he could so I could get through the race. By the time I arrived in VT, my eyes were less swollen. However, I spent the night before the race in a chalet with the rest of my Mudders and a constant cough and low grade fever. By the next morning I woke up feeling like I had a cold, but I was too excited to let that stop me. There were 11 of us on the team. The temperature was in the upper forties and the water that we had to swim through was 34 degrees. During the Tough Mudder I became hypothermic and I spent the 2 ½ hour car ride home dry heaving every 30 minutes and dizzy. I thought I was dying. I should have gone to the ER, but it was Mother’s Day and my children were expecting me home. I was out of work for the next week with fainting, dizziness, sinus infection, low grade fever, weight loss, cough and laryngitis. People said I looked like death. However within one week I was feeling better which was pleasantly surprising since once I am sick it usually takes a long time to feel better/recover.

July 2011-Thanks to the detox, my breasts stopped swelling and the pain and tingles subsided. I felt better so I started training again for another obstacle course race, The Spartan.

Spartan race-2011

August 2011– my sister in law, Jess and I ran in a local 3 mile race (to help us get in shape for the Spartan). We ran our best time and I felt great, however the next day my left hip was in excruciating pain. I decided I would not work out for the next 3 weeks until the Spartan. The day of the Spartan, I felt great and the temperature was extremely hot. My body loved the race and I felt great; however the next day I woke up and my left hip was in excruciating pain. I had one more race to complete 4 weeks later so I decided to take a break with working out until that race.

(During this time I also went back to my eye doctor because I had spent the past year with blurry vision and double vision. I also had to start wearing sunglasses when sitting at the computer because my eyes became sensitive to the light. I also began to have difficulty driving at night because the glare of other oncoming headlights would cause an “aura of light” across my visual field.)

Rugged Maniac-2011

Sept 2011– Jess and I competed in the Rugged Maniac (3 mile obstacle course race). It was a hot day and my body loved it. We did great in the race; however the next day I woke up with both hips in excruciating pain. I finally decided to go for an X-ray, but of course nothing showed up. So I stopped working out, but my hips became worse. The pain became so bad that when I would get home from work, I would use old crutches to hop around just so the pain and pressure would be off my hips. The pain eventually subsided to a bearable amount of pain.

October 2011– I felt stable which was odd, but I liked this calm before the storm.

My husband and I at the “No Reason Reception”-Oct. 2011

Dec. 2011– I completed my detox and I decided to get a personal trainer and started to work out again. By the end of Dec my IBS started to give me problems and the exhaustion was so bad that I was bed bound when not at work or my kid’s sport events. I started to do increasingly odd things with my memory. I would forget my students names or my parent’s phone number…I would space out. I also started to get impacted sinuses and my nose would have this “whistle” sound at times.

Christmas Pic 2011-2 weeks later my arms would be paralyzed

The first week of January 2012, I was at a step aerobics class and I became frustrated because I could not lift my left leg for a ham string curl and by the end of class I could no longer use the step, to step up and down. I had to stop using the step and resort the moves on the floor. I used to be an aerobics instructor so I found this odd for me not to be able to do these moves and I could not keep the routine in my head. A few years before I had joined a dance class and had to quit because I could not keep the routine in my head as well. Now the same thing was happening with aerobics. It was odd.

One week later I would wake up on Saturday, January 14, 2012 with an odd flu bug and my life would never be the same again….

Please continue to my next post The Odd Flu Bug that changed my Life…

Here is a website that lists symptoms of Lyme Disease and Tick Borne Infections (If only I had known!)

Medical History: Shown below is the letter that I sent to a homeopathic doctor that came highly recommended. At this point in my life I was sick of doctors and I was very defensive with new doctors (and at the end of my rope); however I knew she could be trusted so I poured out my heart and “body” into this letter. I look back on this letter and I shiver to think about how all the symptoms that I have listed are those of Chronic Lyme disease and tick borne infections. Lyme is known as “the great imitator” because it can mimic hundreds of other diseases. Listed below is my point, exactly…(I have highlighted each symptom that coincides with Lyme disease and tick borne infections.)

January 2011

Dear Dr. O,

Thank you for getting back to me so quickly and I would love to meet next week. I wish that I could sum up my medical history and say “in a nutshell it is ____”, but I have had so many different issues it is easier just to list. I would say my current issues are my breasts (inconsistent inflammation, but not pain), bowels (mainly pain and irregular) and thinning hair.

I know that my way about me is extreme. I am extremely energetic, I am extremely helpful to people, I can get extremely anxious, extremely stressed, extremely fatigued and when I get sick it is extreme and unusual. I have noticed these extremes since college (1993-1997) and I have had many theories about myself over the years. These theories include “allergic to my female organs”, hormone imbalance, bi polar, adhd, allergies, irritable bowel syndrome, chronic migraine and menopausal side effects. I know that I sound very serious when I list these things, but what you will find is that I am very realistic about myself. My friends, family and I love to laugh about my “isms”. Some of the things I have experienced are so unusual that it is comical.

Background….

Middle school and high school I had the best upbringing. I loved every part of life and when I stressed it would be over normal school stress and I only suffered sinus infections. In 1993 I had reoccurring strep throat and had a tonsillectomy in August of 1993. This surgery also seemed to cure my sinus infections.

All my life I was a dancer and gymnast. Although I was thin I did not suffer through the trauma of eating disorders due to the best coaches and dance instructors. However, I do think dance and gymnastics were the downfall of delaying puberty and my period problems in college.

And now the problems begin…..

1993-1994: I started college, gained weight (10lbs) and my periods became inconsistent. Many months I would skip my periods. I also started on and off different birth control pills from 1993-1996. The pills increased my breast size and gave me extreme breast pain and also made me feel crazy. My breasts have never been the same since. I also had my rightknee randomly pop out for two weeks and I needed crutches. I had never had knee problems before.

1995 : I met Josh (my husband).

We were young, crazy and in love, but even that did not stop unusual symptoms. I started to have extreme cases of constipation, bloat and diarrhea and my periods continued to be irregular. I also started to have reoccurring urinary tract infections.

1996-1998: I continued to have irregular periods, bowel pain and painful breast swelling. I started to have anxiety from all the unpredictability of my body and was placed on Xanax. I also had one more episode of my left knee popping out, but it was not as bad as the last time (lasted 2 days).

1997-1998: Saw a homeopathic doctor in Concord, MA and was given 3 tablets (?) that dissolved on my tongue and it was the only time my breast swelling was decreased for 6 months.

1998-1999: Three months after marriage I had severe abdominal pain, weird vaginal discharge and painful breast swelling (again). After meeting with a million different doctors, I was finally diagnosed with endometriosis and painful swelling of the breasts.

Endometriosis-1999

Feb 1999: I had a laparoscopy to remove endometriosis from my uterus and rectum (apparently it had spread into my rectum, which, explained why I felt like a knife stabbed me every time I sat down).

Only 1 month after the laparoscopy, I developed ovarian cysts. I was placed on Lupron for 6 months. The Lupron shots helped my uterus feel the best it had since high school and breast swelling decreased; however the menopausal side effects were crazy.

Left: Endo/IBS pain-1999Right: 6 months pregnant-2000

Feb 2000 I became unexpectedly pregnant. I did not know if I would even be able to have children due to all my uterine problems. I had a horrible pregnancy. My son was 8.3, but he sucked the life out of me. I threw upa million times a day until I pushed him out and had low blood pressure. No doctor could explain why I was so sick.

Tyler 11/21/2000

May 2001: I became pregnant 6 months after my son was born. I had a miscarriage in July 2001.

September 2001: 10 weeks after the miscarriage I became pregnant. It was another awful pregnancy. This time the vomiting was worse and my blood pressure was extremely low (and has remained low).

IV during pregnancy

My second son was a healthy 7.6, but my body was wasted. It was like I was allergic to my pregnancies. I also began to have swallowing difficulties and continue to have.

Ryan 6/28/2002

June 2002-December 2002: Developed such horrible vertigo (they thought hormonal from the pregnancies) that I was put on Sarafem for a short time. Vertigo eventually stopped on its own and I stopped Sarafem after only 3 weeks.

Constantly wore headband for vertigo

March 2003: The endometriosis came back even worse. This was my last period ever and I began Lupron shots for the next 2 and ½ years, as well as, Paxil for anxiety and Wellbutrin for a few months. The breast swelling was decreased on the Lupron, but hot flashes and night sweats began.

June 2005: I had a hysterectomy to remove the endometriosis and adenomyosis . Best thing that has ever happened to my body and the breast swelling stopped and I went off all medication. The recovery was tough and I had extreme weight loss in a short time (10 lbs in 2 weeks). I always wondered if this is where my hair problems may have started and if where my immune system started to need to attack other parts of my body.

Total Hysterectomy-2006

Spring 2006 and Spring 2007: I would develop allergies for 6-8 weeks (never had them). The allergies would come on so fast and so extreme that I would have to be taken to the ER. My face and eyes would swell shut. I was placed on allergy medicine and eye steroids. My left knee also randomly popped out again. I wore a knee brace and it was fine after a few days.

February 2008: My bladder hemorrhaged. It was the worst pain of my life. The pain was so bad that I passed out in the ER waiting room. I was diagnosed with Interstitial Cystitis and Painful Bladder Syndrome(IC/PBS).

April 2008: I was put on Concerta in hopes to reverse my immune system and possible ADHD. I developed a yellow spot on my scalp, extreme scalp itching, lost even more weight and more hair thinning. My hair has never been the same. I stopped Concerta December of 2008 because I could not handle the side effects and it did not seem to be helping any.

June 2009: I developed an unusual pain in my left side and my stomach swelled. My doctor thought it was a nerve ending in my scar tissue from the hysterectomy and gave me a few nerve blocks. After the nerve blocks I would feel nauseous and begin to faint. Within days of the last nerve block, I suffered vomiting and the worst head pain of my life (I honestly thought something was going to burst in my brain); however, my stomach was not bloated or hurting anymore lol. I was rushed to the ER and given a spinal tap. I was diagnosed with chronic migraine (never had that before). I took Excedrine migraine and started feeling better; however, a few days later I was back in the ER because the base of my spine hurt so badly. They found blood at the base of my spine. I was sent to Lahey Hospital for a week (and had a 5 hour procedure to find the cause). To this day I am a case study because they could not figure out how the blood got there. I was bed ridden for 6 weeks until the blood dissipated. During this time my legs were extremely numb and tingly.

2010: has been fairly calm( hurray!); however my bowels are irregular and the bloating can be painful (had ct scan for diverticulosis). I was diagnosed with irritable bowel syndrome. My scalp is itchy and hair thinning and my breasts inflame every so often. The past 2 years I have had fewer problems with allergies, but I am now developing reoccurring sinus infections and I am having reoccurring sore throats and laryngitis (I live on cough drops). Could it be vocal cord atrophy with menopause? I also have extreme itches under my arm pits and chin/neck. My scalp is also extremely itchy. I have found that I can only use shampoos with ammonium chloride (Suave or V05 shampoo). I have been told that these shampoos are the worst for your hair and can strip your hair, but the more popular shampoos have sodium chloride which seems to aggravate the itching. I have no idea how I figured this out lol. I am also finding that I wake up in the middle of the night (sometimes sweaty) dizzy and my ears are ringing. And speaking of sleep, it is inconsistent. It ranges from insomnia one moment to other moments/days where I am so physically exhausted that I sleep all day and still do not feel rested. I am not a big drinker, but I have found that when I have one drink, I feel instantly buzzed, dizzy and stupid. I have never vomited from drinking, however, recently, after only one or two drinks, I will vomit and the next day I will have the worst headache, vertigo and nausea. Maybe I am just allergic to alcohol which is fine, but it is just odd.

Please know that I am not trying to dwell on what has happened to me, but simply trying to give you crazy background history. I feel like every 6 months my immune system has to attack something in my body and I develop something weird. I feel like when something is finally at bay, my immune system wants to start in on something else. Although I can easily laugh at myself, I am tired of hearing “Kelly your sick again” or “Kelly you have the weirdest things happen to you”. I am tired of everyone trying to come up with reasons for my problems like “you need to take more vitamins or “you’re just too busy, you need to slow down”. I just want to have some consistency with my body (whether you think it is physical or psychological or both) especially for my children and my husband’s sake. I feel like they deserve it the most. I am not looking for you to fix me or cure me, but just some new theories or pointers in a certain direction would be so helpful.

Side note: My mom had a hysterectomy at 40 due to heavy bleeding. She has thinning hair and she has elevated anti nuclear antibodies with possible Lupus and Reynaud’s Syndrome. I have had blood work in the past 2 years for thyroid, hormones, elevated ana, iron and other things, but so far everything is normal.

Since this email is the size of a small book lol, you are welcome to take off some of the 90 minute initial consult time.

Thank you for your time,

Kelly Downing

Please continue to my next post More Odd Ailments 2011-2012…

Here is a website that lists symptoms of Lyme Disease and Tick Borne Infections (If only I had known!)